Image Credit: Warren Allott
Early on in the pandemic, at the beginning of the first lockdown, consultant neurologist Suzanne O’Sullivan began to feel breathless as she walked up the stairs. “It was all so scary. I was thinking: ‘Oh my God, do I normally feel this breathless?’ I bought a thermometer and started checking my temperature, having not taken my temperature for years.” Fortunately, the symptoms soon dissipated. It wasn’t Covid. But like so many of us, hyper-vigilant and zeroed in on every ache, headache and sneeze, she had been primed for the worst. “It was understandable and perfectly normal,” she says. “Anxiety will produce changes in our body, which we easily attribute to the illness.” It’s a simple example, which neatly demonstrates just how easily the psychological can manifest as the physical, especially in the environment of this past year.
As a neurologist, O’Sullivan is well aware of the complex tricks our minds can play on us. Around a third of her patients at the National Hospital of Neurology in London, where she has been a consultant since 2004, have physical conditions caused by psychological issues. “I run a seizure clinic and about a quarter of the people who come to me believe they have epilepsy. But it turns out there’s a psychological cause.”
That mysterious zone, where the psychological meets the physical, is something she has written about extensively. Her debut, It’s All in Your Head, won the Wellcome prize for science writing and her latest book, The Sleeping Beauties: And Other Stories of Mystery Illness, offers an elegantly nuanced study of the many extraordinary ways in which psychosomatic illnesses can play out in the flesh.
In the book, O’Sullivan threads her way around the world, visiting communities affected by “social contagions”. In Sweden, in 2018, O’Sullivan saw Nola (not her real name) 10, who had been asleep for more than a year, unresponsive and kept alive through a feeding tube. Nothing doctors could do would wake her, despite brain scans revealing that there was no physiological damage. Nola’s doctor had hoped that O’Sullivan might discern a neurological cause, but it was quickly apparent that something else was going on.
Nola and her sister, who had more recently fallen ill, were not the first, or only, children afflicted by this condition, known as “resignation syndrome”, which has affected 169 children in Sweden over 20 years, with the first reports appearing in the early 2000s. The syndrome, dubbed
“sleeping sickness”, affects children of refugee asylum-seekers – children whose families are in limbo and who may, the moment they wake up, be ejected from their homes, to be returned to a country where their families have suffered severe trauma. Some of the sleeping children had recovered, but only after their families had been granted residency. Nola had arrived in the country as a young child, Sweden was her home, but the family’s application had been turned down. It was plainly obvious what needed to happen for Nola to wake up.
“Biology was being used to legitimise the suffering, so that people didn’t have to have a conversation that was too awkward. It’s very hard
to address social factors, so we look inside people’s heads with brain scans and psychological theories,” explains O’Sullivan.
Her experience in Sweden led her to other contagion-afflicted communities. Soon she was on a plane to Kazakhstan, where 140 people had fallen into a prolonged sleep, attributed to an environmental poison but in fact probably caused by psychosomatic issues. Then on to Colombia, where hundreds of girls had developed contagious seizures, and upstate New York, where 16 schoolgirls had developed Tourette’s-like tics.
“What I was trying to do was find out what these people had in common, what it all meant,” she says. “When 100 people get sick you need to look at what’s going on outside them – what environmental thing are they sharing?”
What she discovered on her travels was a tangle of social causes that became apparent as she talked to communities. The town in Kazakhstan, for example, “had been a Soviet mining town, an incredibly privileged town under the protection of the Soviet Union, but when [it] broke up they lost a lot of things,” explains O’Sullivan. “People didn’t want to leave their town. The sleeping sickness came as a sort of social solution for them, because it gave them permission to leave.
“Sometimes psychosomatic problems come also as a sophisticated solution to a social problem we just can’t fix.”
Under O’Sullivan’s thoughtful tutelage, this makes perfect sense, but what many of us struggle to comprehend is quite how such dramatic physical symptoms can come to pass, when there is not a jot of physical damage.
She explains it thus: “The unconscious part of your brain has many different mechanisms that are protecting you and keeping you safe, making you efficient. We have templates for everything. And when we look at any sensory experience, we are comparing it to a past experience. And we also do that with illness. So we have all these templates for illness and we can inadvertently play them out when we meet an appropriate trigger. That trigger could be struggling to recover from difficult illness, or fear of a pandemic.
“If, for example, you’re told there’s a virus, you think: ‘What are the symptoms? Do I have them? Then we start checking our body. But our body is a constant mess of white noise. Our heart rate will go up, our breathing will go up. If I’m healthy, I’ll ignore those things.
But say I’m caught in a pandemic, I will start paying attention to my body and start picking out feelings that I ordinarily wouldn’t think about.” From here, it’s not such a stretch to imagine that some of those 1.1 million people in the UK experiencing long Covid, as estimated by a survey by the Office for National Statistics (ONS), might be suffering from something other than the disease?
O’Sullivan believes that for a percentage of patients suffering from long Covid, the symptoms are coming from their mind. “It’s impossible to say what percentage, but there will certainly be people for whom most of the physical symptoms they are experiencing are more to do with the psychosomatic side, rather than end organ damage from the virus.
“I think when people go to the GP and the GP says: ‘I don’t think it’s actually the virus that’s causing it’, people think they are being dismissed, as if they are mad, or anxious, but the symptoms you get from a psychosomatic illness are very real and just as troubling. The big problem at the moment is that psychosomatic implies mad or crazy, or that you are weak. We need to change our view of what it means to have a psychosomatic disorder.”
The best thing we can do, says O’Sullivan, is listen. To ask people what they think might help them. These patients need some semblance of normality to feel safe again, and to feel that they can trust their bodies. “Fortunately there is a little anecdotal evidence already, that people [with long Covid] are beginning to recover, through being vaccinated.
“We’ve all been a little scared that we’ll never recover physically or socially, but once we have faith in our recovery, hopefully people will begin to feel better.”
What of the communities documented in her book? The American girls with Tourette’s improved after the media circus left. The epidemic of seizures in Colombia is still playing out, fuelled by suspicion of the local medical community. The asylum-seeking children in Sweden are still asleep.
Sleep is the only voice they have.
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